About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Wednesday, March 22, 2006

Autism is a Netherworld

This is a story for parents and friends of parents with autistic children. Something has happened between myself and a friend that has spewed many bottled up emotions regarding Adam’s autism. This is a friend, like many others in my life, who have dolled out “empathy” regarding our lives with autism. Yet, the problem with empathy is, what is the message? Is this person empathetic because they feel something is wrong or missing from our lives because of Adam’s autism? In fact, empathy from others, leaves many parents of autistic children feeling isolated. Empathy connotes that something is “wrong.” Pretending autism is not a different life in and of itself, also doesn't cut it. Autism is a netherworld. It is neither, in the words of Paul Collins, an ability or a disability. It is a way of being, different than mine.

This story goes back to the weekend of November 28th, 2004, the weekend we suspected that Adam was autistic. We weren’t sure on a Friday that we should decline the previous dinner invitation from our friends down the street. We explained what we had just learned and why we were tentative. But these friends said “nonsense,” and insisted we come despite the news. My eyes were puffy, my heart pounding. The news, or discovery, just three hours old. My girlfriend did not try to mask the tension and instead embraced it, talking about the many learning differences of her five kids and some information she gleaned from a paper she did in school about autism many years before. Adam trotted back and forth in their home, exploring rooms and hallways with a nanny following behind – he was a mere nineteen months old. I will remember every aspect of that day from three o’clock on, and how relieving it was that these friends did not stare at Adam or try to mask the issue with fake empathy.

That weekend was really tough. I cried too much, yelled too much. There was too much advice from friends pouring in like a deluge, and I wondered why I didn’t know about autism before. There was too much information on the Internet, which we scoured the entire weekend anyway. With this type of news, as with any crisis we are confronted with in life, my instinct was “to beat this thing.” Obviously, the early view was that Adam had something, and with therapy and diets, we could overcome it. Since then, I've come to learn that autism is not something you have, it is something you are.

Sunday rolled around. We were invited to other friends but by this time, I really wanted to cancel. We should have cancelled, but Henry convinced me that it was good to get out, as Friday’s experience was a positive one, and this would help get us out of the tunnel of despair. We arrived at our friends' and a playpen was set up for Adam. I placed him in and turned on his favourite Baby Einstein videos. He jumped up and down reciting the alphabet and counted to twenty. Then there was silence. These friends stared at Adam for the longest time, sadness and fear crossing their faces as if they were looking for the defect. Now, perhaps they were thinking, everything was explained. I was enraged. I yelled at them. How dare they stare. How dare they feel sorry for us!

“Oh Estée,” said this girlfriend laced with a bucketful of pity, as if my anger represented my own fear and disappointment over Adam. No, I was angry at their staring, at their new fear of him. I pretended through dinner and cried all the way home. There is nothing more isolating than friends who stare, who believe there is an abnormal, who think it is kind to disperse pity on you. How do you continue to have a fluid relationship with people you can’t be honest with? To this day, I’ve wanted to tell these friends how angry I am with them for not listening, which I interpret as not really caring and I hope this story helps others who are friends of autistic parents understand how pity can be interpreted. I've tried to find the opportunity, but some people are just more open than others to these issues, perhaps. There are lots of people with "pity" who will pull out their wallets at the drop of a hat, who will support any charitable endeavour for autism. It is something they at least can understand. It is a tangible way to help. At least they are doing something for this “horrible disorder,” right? Alturism, however, exists largely for ones-self, not for the other. While I searched early on for organizations to support Adam, like NAAR, I've also come to learn how many people will not accept autism by supporting this organization, thus viewing my son and people like him, as an aberration, an illness that must be cured.

The expectations I’ve had with doctors over the years has been fairly high. Since my girlfriend belongs to this profession, I expected more.Yet, even with Adam’s doctors, I’ve always expected that they will understand sensory defensiveness, and take their time with Adam. To my dismay, I am always shocked how they raise their voices like he’s dumb, actually making the whole experience of a doctor visit more terrifying for him, and how they expect Adam to behave the way they expect. I've had to educate the "professionals," something I did not expect when I was seeking support for our family.

Expectations. There are a whole lot out there about autism. There are a whole lot from me towards the people I love, which sets the bar perhaps a little too high. It is a problem because autism doesn't fit any frame, so perhaps no one is right or wrong here. There are many expectations I’ve had to reframe in my own life and the way I look at Adam and the way I look at others. Knowing what I know now, the daily explaining I have to do about autism, I expect people who know me to listen and learn, not to feel sorry for me. I expect them, as this is the most important thing in my life, to help me disseminate positive messages about autism, as I am confronted day in and day out with people who don’t understand, who get their misguided messages from big organizations seeking to cure autism, from television. I expect them to ask me questions if they are confused. I like open, tough questions. I expect that, because they love me, they will understand that my tears don’t come from the fact that Adam has autism, but rather, from the fact that even those closest to me, still don’t entirely get it, or that I have to advocate for Adam every single day – and that can actually be very exhausting. It is exhausting for messages to largely fall on deaf ears, but it is utterly important to keep on trying.

Failed expectations can leave one feeling angry. I am still angry to a large degree because I haven’t been able to tell this person how I have interpreted her pity, or that weekend episode. I am angry that there is so much prejudice in society and I keep trying to dig deeper so that people might see it for themselves, and how views about normalacy and perfection are social constructs serving only to marginalize people like Adam. Failed expectations, however, are also cathartic and freeing. It means that there are no boundaries and we can, if we choose, transcend all of this.

Don’t mourn for me. Don’t mourn for those with autism. Autism is a world – a netherworld, a place filled with paradox. We need understanding for autistic people as both different and the same; we need acceptance of autistic people as intelligent, but also handicapped in a world that thrives on language and other physical and social functions; we need to provide schools that intellectually challenge persons with autism while providing supports in the environment for sensory needs and different styles of learning; we need you to understand that autistic people see the world differently and may behave differently, but are not to be viewed as a set of behaviours or pathologies that should just “fit in” with the rest of society; we need you to understand that people with autism may appear disinterested but want to belong; we need you to acknowledge that autistic people may want to belong but also need time alone because processing the world is much more difficult; we need you to understand that people with autism want to contribute to society and the rest of us need to support education and occupational opportunities to enable self-esteem and identity; we need you to understand that as a family, the daily structure of our lives is different from yours, but we still want to be included. As a parent, I don't want you to tell me that I need to go out more, no. I need you to support the work I am doing right now.

No dear friends, if I cry today on my birthday, it is because all Adam and I seek is your unconditional love. It is the only birthday present I want.

I too struggle with other people's perceptions. I get very angry when people come to our home for dinner and completely ignore C but play endlessly with his sisters. One time my father-in-law was visiting with his cousins (whom we had never met) and he introduced T as "the outgoing one" and her twin brother C as "not really with it". I've never been so angry in my life.

Then we have people who tell us we're over-reacting and that C is really a genius because he can spell at 2; that one day we'll look back and laugh when he graduates from an Ivy League school.

Other people's ignorance is... daunting, to say the least. It is difficult when it comes from those you consider friends, and moreso when it comes from one's own family members. One of my brothers is having difficulty believing that I have ADHD; the rest of the family has taken it all in stride. They know that I am the same as I always have been, and the brother who doesn't believe it mainly doesn't see how I could have gotten so far in life when I have this disorder.

I have been incredibly lucky in my choice of friends, though. My best friend was "with" me through the wondering process, and bolstered me as I geared up to get assessed. And she took the news in stride. She hasn't changed how she relates to me at all, and I treasure her for that.

Another post, by the way, that hits on issues I was dealing with just last night, though this was more ignorance in the general population. I just blogged about it this morning, now that it's done.

You have an incredible way with words. These same thoughts about the netherworldliness and often apparent lack of understanding from the tv-watching public at large, led to my post about the Platinum Rule as a way to deal with these situations. I however, was unable to communicate the true nature of the source of my frustration which you have done thoughtfully and eloquently.

You hit on an important point with the phrase "fake empathy." True empathy is the ability to temporarily take another person's perspective, whether or not one agrees with that perspective, and understand where the other person's coming from based on that perspective. It's partially a talent and partially an ability that can be cultivated, but it is not actually the norm for the general (non-autistic) population. What usually passes for "empathy" is really a form of projection where you look at what's going on with the other person from your own perspective and try to imagine how you would respond if you were in their shoes. This really represents a defective "theory of mind" since it assumes that everybody else thinks and feels the same way you do.

True empathy also requires one to "clear out" one's preconceptions (nobody can do this completely, but those with empathy can do a better job than most) in order to see what the other person is actually experiencing externally. Fake empathy, on the other hand, relies heavily on preconceptions. In a way, the difference between empathy and pseudo-empathy is similar to the difference between a scientific and non-scientific world view; the scientific world view and true empathy both require that one treat one's external world as it is rather than as one might want it to be.

I neither look for nor want empathy, or even understanding and acceptance is just the start----but if Charlie and I might teach this a bit to others, it's a good day's work. (And best wishes on your birthday.)

i may not have had the very same experience as you describe here with your friend that weekend back in november, but i have struggled with much isolation and some hurt and anger as a result of many people not 'getting it' and not seeming to want to get it. it takes really looking, really seeing, and really hearing and all of that is an ACTIVE process that many people, i think, are afraid of engaging in.

The greatest irony concerning these empathy-challenged folks is that... isn't this an area that people on the spectrum are supposed to be "deficient" in? It makes me wonder who is setting the empathy standards here... **mumble** In other words, who decided that fake empathy is better than a "lack" of empathy...

We are fortunate in that most people in our lives either accept B or stay out of our faces :) I think our families are the ones who have had the most difficulty, but it seems reasonable, since they have a great deal more "invested" in him than non-family members. But they are trying... & no-one is telling us he needs to be "cured", which is a great blessing (& means that they are following our lead).

I love you. Happy Birthday. To know WHAT-IS is so simple if you are willing to deal with the confrontation as you would a snake in the grass. You don't pick it up and handle it; you let it slither away. It's something like the devil or error, it takes your attention until you say: "Thus far and no further do you enter into my garden that is uncontaminated by the fetters of hypothetical disease."

We don't have a lot of friends, but the ones we have are good ones, and for the most part just accept our son as he is. (One, who used to baby-sit him a lot when he was a baby, was a little surprised at his autism diagnosis, but then thought about it and said it made sense. But she'd just always known him as him, and sure, he was a little odd in some ways, but that was cool with her.) I guess I've had it easy in some ways because we don't get much in the way of "fake empathy". I'm sorry you've had to deal with so much of it.

You're "autistic-friendly"; my best friend, who is NT, is very much so, as well. She's baby-sat all my kids and loves each of them very much, and appreciates each one's unique xe-ness. It's good to have such people in the world.

I wouldn't go so far to say that this person is "ignorant," but to say that people do not understand the complexity of autism and may feel that pity is in order, like dispensing pity on cancer.

It is difficult for friends and families, perhaps to know what to do. I acknowledge the difficulty. Some people (friends) can handle full-on, others are stunned, searching for ways and means. This deserves noting.

How I interpreted that weekend was very real for me. It is an indelible etch in my memory. It represents a problem of our society, charity, empathy and how autism is currently framed under all of this by organizations like NAAR, Autism Speaks, Cure Autism Now and Defeat Autism NOW!, who keep sending the messages that autism requires curing. That are children are sick.

It is my job, our job as parents, to be relentless in educating others. These same friends who can learn from their mistakes, can help us carry this message on.

Estee, I've been reading your blog since a link from another blogger led me to it. I'm shy about posting and rarely do it, anywhere, but I must tell you this entry is one of the most articulate and affirming things I've ever read. Yours are the words I seek and cannot find when I'm trying to relate the stories and adventures of life with my amazing kid to family and friends. Yours are the descriptive phrases (Autism is a netherworld....a paradox...) that ring so true and paint such a real-life picture of our unusual existence. Thanks from the bottom of my heart for being out there and speaking your truth so eloquently. Sincerely, Melinda

What would you do if you thought your nephew was autistic but he was not yet diagnosed? I do not pity him, and have known since he was a baby that he is very intelligent, but also, as if he was somewhere else (in his mind), that's not right, here with us but understanding that here differently. I think he is autistic because he isn't putting many words together and he's 21/2. When he does talk his syntax is more unusual than other kids his age. He doesn't do any pretend play. He often plays with toys in a creative way. For example he tries to build blocks over the tea-set, creating a kind of tetertotter :). He has an uncle with austism and a great uncle who is not diagnosed as autistic (manic depressive) but shows a lot of signs. One thing that confuses me is that on a lot of websites it talks about autistic babies/toddlers not smiling, and he smiles quite a bit. Other times though, especially when I'm trying to engage with him in a book or with some toys, he looks right at me with a very, very blank expression - not looking at or taking interest in what I'm presenting. He has oral-motor defensiveness, and has struggled with underweight. Would you want someone else to suggest testing to you, or his this bad empathy? I would like to see him get everything he needs. I also think that some of his autistic behaviors are being interpreted as "naughtiness" and that they are going to regret disciplining him (spanking!) and that this form of discipline will actually make things much worse for him and their family. Not that spanking does a lot of good in the world generally. Sorry so long. T

Wow...I wrote this post such a long time ago...but it sounds like you have a good handle on how you view your nephew with the exception of doubt because of what the other websites say.

It's hard because they tell you what autism should be, when it's far too general. Of course, autistic people smile, of course they show empathy (even if it manifests in different ways), of course they understand the world around them (even if it doesn't manifest in a type of typical expression). Websites and media have a lot to do with over-generalizations of autism. In short, autisitc people are just like you and I, but they have autism. What does that mean? It means they have some challenges living in the world where the majority are non autistic. That's the shortest answer I can offer.

It sounds like your nephew is a wonderful person, and if you want him tested, that's up to his parents. Just know that all tests do not tell you the whole story about him as an individual, and that testers can have their own bias as well when running these tests.

You have to trust yourselves. You have to believe in the rights and abilities, and even the challenges of this boy. He is still so very young and so much lies ahead. You will see so many changes...just as in every child.